Subtle Lines

I'm very open here about Kiki having DS, and I'm not shy about discussing it here. But in everyday life, I'm kind of sensitive about it. I don't want to draw attention to her disability; I don't want to draw attention to myself as the parent of a child with a disability. If we garner attention, I want it to be because she's so damned cute, people can't help but notice her.

I'm sensitive about the idea that I'm trying to court pity or sympathy with people if I bring it up or if I discuss it and the insecurities it brings up in me. I don't want pity. I don't even want to be set aside in a separate category of parenthood; even just writing "parent of a child with a disability" it sounds foreign to me, clunky, unwelcome, like it may describe someone else, but it definitely doesn't apply to me.

I'm sure this is more commonly referred to as "denial."

But I really do believe that I'm no different than any other new parent. So when I read things that are all supportive and fluffily reverent of parents of disabled children, it makes me nervous. I know on some abstract, gray level they're talking about me -- not specifically of course, but that I'm included in this morbid generality -- and I try to look at our situation through that filter, and I think, "This must mean that somewhere down the road, life is really going to fucking suck."

Because right now, in all honesty, life -- barring the day to day annoyances like finances, weather, in-laws, work, etc. -- life is so beyond more fabulous than I've ever imagined.

Life with Kiki is more glorious than I've ever imagined life with a baby would be, and I'll tell you, I have a fantastic imagination.

I won't at the moment go into WHY I spent tonight scouring through the internet for anything related to DS, separation anxiety, and ultimately attachment disorders, but to cut to the chase, I found this article http://depts.washington.edu/isei/iyc/barnett_16_3.pdf. It's REALLY long, and turns out I think to be something specific to a support group, but the first few pages that I read made me go, "Hmmm." Because I did recgonize myself, for the first time, in their description of a parent of a disabled child. And in some strangely indefinable way, it reached a part of me I didn't know was there, and it made me cry.

How many times have I written that now in this blog? Maybe if I keep writing it, it'll sink in. But it's just a label, in the end, and doesn't adequately describe or represent anything in my life.

I'll go more into detail later. For now, it's late, and I still have work and not enough time at the moment to indulge myself in philosophy.